May 26, 2020
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Navigating the aging journey

By: Julie Ann Soukoulis
October 5, 2018

Saturday, October 20, is Sonoma County’s Walk to End Alzheimer’ is in Shollenberger Park located at 1800 So. McDowell Blvd. & Shollenberger Park, Petaluma. I would personally like to invite every one of you to join us there for all the festivities! Registration is at 8:30 a.m. Ceremony begins at 9:30 followed by the Walk at 10 a.m. Walk to End Alzheimer’s unites the entire community — more than 450,000 participants that include family, friends, co-workers, social and religious groups and more —- in a display of combined strength and dedication in the fight against this devastating disease. If you choose to walk, there are two routes you can take- the first is a one-mile option and the other is the three- mile option.  It is a lovely day filled with hope and vendors, snacks, and free reusable water bottles given to everyone who attends. There is live entertainment and music! Won’t you please join us this year, even if it’s to just check this community event out. We would love to host you!

 Barbara Karnes RN. and renowned Hospice educator, has given me permission to share her thoughts of this topic of Alzheimer’s and what to do when the patient does not want to participate in the basic of life activities. Below are valuable insights into caring for a loved one with this devastating disease that not only affects the individual diagnosed, but the entire family.

 QUESTION: What do you think about families that insist their Alzheimer’s patient get out of bed and be with others when all the patient wants to do is sleep, stay prone and not eat or drink.

 It is so hard to watch someone you care about give up on living, doing all the things that go against our idea of what living is about—-eating, being active and interacting. Yet Alzheimer’s, and most dementia patients, do just that. Their living goes against all we believe in. It is horrific to watch someone we love, and remember as vibrant, cease to function mentally and physically.

 Living with someone who has dementia is a daily challenge. It requires the constant reminder that this person is not who they once were. It presents the challenge of learning how to live with the person they have become. Our instincts tell us our loved one needs to eat, get up and move about to live. We tend to focus 

on normal activities.

 My key question about eating, sleeping, and forcing activities, is what are we trying to accomplish and why? What is the outcome we are hoping for? Notice if by forcing the person to eat and get out of bed are they complying gently or are they unhappy and discontent. If they are displaying unhappiness and discontent, why would we want to make their days miserable?

 I think we can shift our focus. Shift it to see the person as they are today and what do we need to do to help them have a “good” today. How can we bring some joy into their life for this one day? Explore what would please this person today. Maybe it is to stay in bed with you or anyone just sitting by them and being a presence. That may be all they need.

 Will complying with their wishes, not forcing them to eat, not forcing them to get out of bed affect the length of their life? Probably. But if life was different and you were the one with dementia wanting to stay in bed and not eat what course of action would you choose for yourself? Would you rather have your final days filled with pressure, force and conflict or peacefully go to sleep a bit sooner.

It is hard to comprehend what is going on in the minds of a person with Alzheimer’s or dementia. We can only project from ourselves what we would want if the tables were turned.

 Something more...

Caring for someone with Alzheimer’s or dementia is a particular kind of challenge.  Caregivers need a great deal of support in general, but as Alzheimer’s and dementia progresses, it becomes more difficult to “reach” the person.  There can be a loneliness and grief in the caregiving.  Support is needed.  My Facebook group, End of Life Care and Bereavement is such a place.  Patients, nurses and caregivers make up this group.   All subjects and questions are responded to with gentleness and care.  Come over and let us support you, my friend. ——-Barbara Karnes

 Our local Alzheimer’s Association located in Santa Rosa, offers support groups and resources such as education days and other resources. They can be reached at 707- 573-1210.  You can visit Home Instead’s Alzheimer’s too!  Because respite care is so very critical to self-care, when caring for a loved one with dementia - Home Instead Senior Care is available to help guide you and offer navigation on the dementia journey. You are not alone!

Hope to see you   Sat. October 20th at the Walk to End Alzheimer’s!

Julie Ann Soukoulis is the owner of Home Instead Senior care office in Rohnert Park, mother of two and passionate about healthy living at all ages. Having cared for her own two parents, she understands your struggles and aims, through her website, to educate and encourage seniors & caregivers. Have a caregiving or aging concern? She’s love to hear from you at 586-1516 anytime.